Helen Noble, Associate Editor EBN

I am a researcher in health services research contributing to health care management of advanced, irreversible chronic kidney disease (CKD). This is evidenced by publications in leading international journals, leadership of successful funding bids, (most recently a multi-institutional NIHR study) and research awards. My research mainly focuses on people with advanced chronic kidney disease opting for conservative management rather than dialysis. The number of these patients is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice.

I am leading the PAlliative Care in chronic Kidney diSease: (PACKS study) which is exploring quality of life, decision making, costs and impact on carers in people managed without dialysis. This study, funded by the National Institute of Health Research in the UK, is also investigating symptoms, cognition, frailty and performance. Recruitment opened in January 2015 and patients are being recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Recrutiment finishes in May 2016 with a further 3 months follow up. Carers are asked to ‘opt-in’ with consent from patients. The approach includes longitudinal quantitative surveys of quality of life and quality of life and costs for carers. Additionally, the decision making process is being explored via qualitative interviews with renal physicians/clinical nurse specialists.

The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It is exploring the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.